Wednesday, November 18, 2020

AlzAuthors

 Today I am thrilled to announce that I am an official AlzAuthor!

AlzAuthors.com is an amazing community of authors and bloggers who are all working to raising awareness of Alzheimer's Disease and other forms of Dementia. There is even a podcast.

Sadly, until we are confronted by the disease itself, many of us know very little about dementia. This was certainly the case for our family. We have learned the hard way and wish we'd known about resources like this site earlier!

The various forms of dementia present in a variety of ways and of course each person is unique. These are some of the reasons the disease can be difficult to identify. The resources at the main site are boundless and incredibly helpful. I hope you'll check it out.

My book Dancing With Dementia is now a part of the AlzAuthors collection of resources. I'm proud to be part of an incredible group of talented authors who have used their experiences to reach out and help others.

I have a post on the AlzAuthors blog today as I join the community. I hope you'll visit the website for more details. I'm sure you'll find something to help you and your family along this journey!



Monday, November 9, 2020

Self-Care 2

Being a caregiver is often exhausting. Both physically and emotionally.

Caregivers need to take care of themselves. It's a cliche for a reason, but you can't get water from a dry well.

Keeping ourselves in good shape emotionally and physically can be a challenge.

Today, let's talk about how to do some easy at-home self-care by being silly.

Here are a few things you can search for online that might get you and maybe even your Loved One in a silly mood.

  • baby goat videos
  • goat sings Whitney Houston (trust me on this one!)
  • jokes for kids
  • knock knock jokes - if your Loved One is still able to read, have them do the reading while you do the answer part, they'll enjoy it more
  • silly jokes about summer (winter, Christmas, birthdays, Halloween, sports, food...)
  • blooper reels for your favourite TV shows or movies
  • kids laughing
  • sports gone wrong
  • pandas
  • silly animals

(Photo by Antevasin Nguyen on Unsplash)


Of course, you don't have to go online to get silly.

  • have a dance party to music from all different generations and styles (Lizzie is in a wheelchair but she still loves to dance!)
  • talk about memories of silly times
  • sing songs from childhood (Row your boat, Doh a Deer, Itsy Bitsy...) and make up the words if you can't remember them
  • draw silly pictures (combine an alligator & mouse into a new animal, draw a squiggle & turn it into a picture)
  • write a silly story and add in drawings (Once upon a time there was a raccoon who wanted to meet Lizzie for tea...)
  • tongue twisters (red leather, yellow leather always gets me!)
  • limericks (There is a young lady named Lizze, who keeps her daughter in a tizzy, they love to sing songs, the shorts & the longs, and Lizzie keeps everyone busy!). Obviously they don't have to be perfect!

There's really nothing quite as healing as a good belly laugh!

Check out the book Dancing With Dementia for more easy self-care tips.

How about you? Any more ideas about silly things to search for? Any other ways to get a good belly laugh?

Monday, October 12, 2020

Smiles From The Dementia Files: Episode 2

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.


Photo by Roman Kraft on Unsplash

Episode 2 - Memories
Circa 2 years after diagnosis


According to Lizzie ... 

Lizzie was in charge of escorting the little kids to air-raid shelters during WWII because she was organized, strong, and smart. Lizzie ensured that the children had partners and walked in pairs in an organized fashion from their classrooms to the shelters. She checked that each child carried his/her gas mask. If anyone became stressed it was Lizzie's job to calm them down and make them feel better. Once they arrived at the shelter, Lizzie counted to make sure no one was missing. To help everyone relax, Lizzie led them in songs and story-telling.

Lizzie was born and grew up in Scotland in a city that was a frequent target of bombing. The trauma of living through that kind of experience has life-long impacts.

Lizzie was also 6 when WWII ended, so she might be a bit optimistic about her role in these events.

Of course, we congratulate her on being a responsible helper and encourage her to share more of her stories with us.

Memories (whether they're historically accurate or not!) are a great way to encourage conversation and connections.


How about you? Any recent smiles?

Monday, August 31, 2020

In-Person Visits at Lizzie's Nursing Home

 This pandemic has changed so much for so many.

One of the major changes is for those people living in Nursing Homes (NH), including Lizzie.

If you've read any of the previous posts (or Dancing With Dementia), you know we live in Canada and that Lizzie is in a wonderful NH with caring staff who work really hard to ensure our Loved Ones are safe and well cared for.

For several months earlier in the pandemic, we were able to do Face Time visits with Lizzie. These were great.

For the past month or more, we've been able to do in-person visits.

Even better.

Seeing Lizzie in person has been awesome. With over 4 months between our last in-person visit and these ones, we were bound to notice some differences.

We find Lizzie is less aware of the 'real world' and more absorbed in her inner world. Not unexpected. Before the pandemic, we'd been noticing it was more and more challenging for Lizzie to remain with us in the regular world and in regular time. We found our daily visits helped her keep connected to us as we are now.

Since the daily visits had to halt, Lizzie has spent less time connected with us and our current realities. I imagine she has spent more of that time in her inner world. In that inner world, it appears Lizzie is younger and extremely capable.

And that's okay. We want her self-esteem and confidence to remain high.

During our visits we see her struggle to know us. Once she hears our names, her face lights up and she says she didn't recognize us. Possibly because she thinks more often of our younger selves.

She doesn't always know who we mean when we speak about her grand-children or great grand-child. But she loves seeing pictures of them anyway.

Music continues to be a source of joy for Lizzie. When we find her mind drifting to sad memories or thoughts, we can generally use a song to cheer her up.

During our last visit as we were leaving, Lizzie became upset and angry. "You're leaving because you don't love me."

Not true. But impossible to convince her with words.

What did work?

Skinnamarink by Sharon, Lois and Bram.


If you don't know it, check out the link. My kids loved the show when they were little and Lizzie remembers us all singing together. The book about the song is a family favourite.

The repeated echo of us singing, "I Love You," helped us leave her with a smile on her face.

How about you? How are your Loved Ones coping?

Monday, July 13, 2020

Using Improv Skills To Improve Communication

Once Lizzie was in the Nursing Home (NH), we found that her friends dropped away rather quickly.

Many people found it challenging to spend time with Lizzie. She was still outgoing, friendly, articulate, and happy. So what was the problem?

The problem was that Lizzie didn't react as they expected her to react. She got facts wrong. She told stories that didn't reflect reality as the listener remembered it. She didn't remember some of their time spent together. She would sometimes tell stories that didn't make sense. She was sometimes determined to make the friend do something the friend had no desire to do (take Lizzie out to a restaurant).

Lizzie's friends had no idea how to react to these changes and all of that combined made visiting troublesome.

I wish I'd had this video to show them!

This video is a TEDMED. It showcases some positive ways to interact with someone living with dementia.

The people in the video have realized that the guidelines of improv acting are very similar to the guidelines for interacting with someone with dementia. They show a couple of scenarios to help viewers get the idea. They give concrete examples of "go with the flow" and "live in their reality."

I loved the "yes, and" tip. People living with dementia hear No a lot. Using "yes, and" is powerful!

LINK

How about you? Have you seen this video? Any tips to help friends be more comfortable visiting people living with dementia?

Photo by Avel Chuklanovon Unsplash

Monday, July 6, 2020

Power of Music 2 - Using My Teen Years

When Lizzie becomes stressed, music is a definite soothing influence.
I often use music as a way to redirect her from whatever is bothering her or whatever she has focused on.

Today, let's focus on music from my (or your) teen years. Music is often extremely important to teens and the songs are ingrained in our memory. Or maybe that's just me. 😊 Because we listened to and played (on the piano) a LOT of music during our teen years, Lizzie also knew our favourite songs really well. She also tends to remember who we had celebrity crushes on and we can use that as well.

Sometimes I use the, "Oh I heard this song on the radio on the way up to see you!" trick. I'll choose a song from our teenage years, something that she'll remember. I start to sing the song or the chorus.

From there, I can generally turn the conversation to something less stressful for Lizzie.
a turntable with a record playing
Photo by Lee Campbellon Unsplash

I love this song. The singer's hair reminds me I wore that same kind of style in high school. Do you remember those horrible curls I had? Why did I think that was a good idea?

This song always makes me think about dancing. Did you enjoy going to dances when you were younger? ...or... I remember how you helped me do my hair before high school dances. ...or... I remember when we used to dance in the rec room in the basement. ... or... What kind of dancing is your favourite? ...or... Did you and Dad enjoy the dances? ...or... Do you like watching movies with dancing?

I love Billy Joel's songs. He's such a great musician. I can't imagine being that talented. How old do you think he was when he learned to play piano? Can you imagine how scary it would be to play in front of a huge audience? Billy Joel whistles during some of his songs. Can you whistle? Billy Joel plays harmonica in this song. Was it your brother who was a good harmonica player?

This song is so much fun. I like the silly chorus. Can you think of any other silly songs? I like the way the chorus rhymes. What other words could rhyme with it?

I had so many Barry Manilow albums! I think my favourite was the one with the piano player statue on the front. What album covers do you like? Some of the albums were real photos, others were illustrated. Which do you like better? I wonder how many songs I can remember. Can you count for me as I list/sing them?

This song was popular when I started dating hubby. Hubby and I always danced to this song at high school dances. (These always lead her to talk about hubby who is one of her favourite people.)

This was the theme song from that TV show I used to watch. My favourite character was...  I hated that show, but I liked the song. Did you? I liked the show but hated the song. Did you? What kind of song makes a good TV show song? Fast or slow? Serious or silly?

This song always reminds me of...

When I'm walking up from the parking lot at Lizzie's nursing home, I always pick a song or two in my head. This helps me be prepared for those moments where she might be stressed or scared or angry. Being prepared and having something chosen in advance always means I'll be more successful in helping her regain her equilibrium. Using music as a distraction has a good chance of helping Lizzie feel happy and content.

How about you? Have you ever used songs from your teen years to help soothe your Loved One? What other questions can you think to ask?

Monday, June 29, 2020

Dementia: One Size Does Not Fit All

I stumbled across the Daily Caring website earlier and found this excellent infographic. The Infographic was created by Be Independent Home Care.

(this is only a screenshot of the title
- there's lots more!)

A few things I especially like:
  • it shows the different types of dementia
  • it explains that Alzheimer's is only one form of dementia (I'm always encountering people who don't know this)
  • clear layout
  • solid information in concise terms

The fact that dementia is expected to TRIPLE in numbers by 2050 is terrifying.

It might be a great resource to share with people who don't always understand.


How about you? Do you find you have to explain that dementia doesn't come in a one-size-fits-all package? Did you find anything helpful in the infographic?

Monday, June 15, 2020

Video Chats With Lizzie

COVID-19 has changed so many things, including how we're interacting with Lizzie.

Before COVID, one of us visited with Lizzie every day. We'd bring tea and chat. We've found that frequent visits help to keep Lizzie attuned to the here and now.

Enter COVID and that obviously had to change.

While we miss those daily visits with Lizzie, we're glad the nursing home (NH) is keeping the residents isolated and safe.

After the first week, the activities staff in the NH started arranging video chats through FaceTime and Skype for all of the residents. With over 400 residents, this was a big task.

Lizzie hasn't been able to use a phone independently for a few years now. A staff member dials the call and holds the screen so Lizzie can see us. Sometimes she thinks we're on TV. 😀
masked staff member helping elderly woman with video chat
Photo by Georg Arthur Pfluegeron Unsplash

Lizzie being Lizzie, the calls are usually entertaining. She sometimes thinks whichever staff member is helping her with the call is another daughter. The first time, the poor young staff member was embarrassed and worried we'd be upset. We think it's great. Lizzie believing she is surrounded by family is an awesome thing! Lizzie even braided one staff member's hair throughout one of the calls.

Because the screen is small and there is activity happening around her, Lizzie can become distracted during the calls. Sometimes she wants to introduce us to everyone walking by. Other days she gets tired quickly of concentrating on the call and zones out. It's definitely more challenging than an in-person visit but we're grateful for every call.

We've found a few things that help. Lizzie loves music so we use that, either singing a song or playing one on the piano. We've even found one staff member who is willing to sing along with us!

Complimenting Lizzie works too. "That top sure looks great on you. Your eyes really pop when you're wearing that colour." "I remember you always told us you enjoyed school. What was your favourite subject/teacher/class/friend/activity?"

Pretending to suddenly remember something is a good ploy too. "Oh! Did I ever tell you about that time...?" "You'll never guess what your grandson did!"

We avoid bringing up COVID as Lizzie appears to think nothing is unusual and that we are actually there rather than on the screen.

Overall we're so lucky.

How about you? Anyone else doing video chats with Loved Ones in NHs? Any tips on distractions? Topics to use or topics to avoid?

Monday, May 18, 2020

Self-Care 1

Taking care of someone with Dementia creates a lot of strong feelings.

If you're a caregiver living in the same home with your Loved One, I can only imagine the range of feelings is incredibly intense.

Through our own experiences and from my conversations with others, many caregivers and family members feel:
  • worry
  • anxiety
  • fear 
  • grief
  • love
  • joy
  • panic
  • peace
  • helplessness
  • loneliness
  • exhaustion
  • and so many more
Through those conversations, it appears that the negative emotions often overwhelm the positive emotions, especially when the caregiver is worn out.

So, how do we create some easy self-care?

For today let's focus on online ideas because we know that some people never have a chance to get out and about.
  • Teepa Snow videos. She is brilliant and considered the leading expert on Dementia for a very good reason
  • my own Quick Tips videos
  • if you're on social media, you can check to see if there on support groups. Read the rules carefully to ensure you're going to feel safe in posting. Tread carefully at the beginning because not all online groups are created equally!
  • check out the Alzheimer's sites for ideas to help you cope
  • meditation apps and exercises
    • I've used Calm and Triangle breathing successfully with students at school
    • there are lots of options out there, keep looking until you find one that works for you
How about you? What other online supports do you use? Any experience with meditation apps?

Monday, May 4, 2020

To Celebrate or Not To Celebrate?

There are many different thoughts as to how to celebrate special days with our Loved Ones.

Each person is unique and many different factors will go into the decisions.
  • what stage is your Loved One at?
  • how aware are they of the day/date/time of year?
  • will they know about the day if you don't mention/celebrate it?
  • will the day bring good or bad memories?
  • will the day trigger thoughts about dead friends/relatives who Loved One wants to celebrate with?
One Mother's Day, Lizzie became very upset about not having ordered flowers for her mother and mother-in-law. Her mom had died when Lizzie was a teen, her mother-in-law had died more than 30 years before.

Did the good memories and the fun times we had that day out-balance the bad ones?

Yes.

Will they this year?
Who knows?

All we can do, is look at the issue from all angles and make what we think is the best decision.
Then cross our fingers and hope for the best!

Of course, if your Loved One (like Lizzie) is in a Nursing Home, this year will be very different. Because the staff at the home is amazing, we know we'll be able to video chat with Lizzie on Mother's Day, but we won't be able to bring her flowers and chocolates and her other favourites. We'll make up for it later but we wonder how this will affect her.

How about you? What do you do for celebration days like Mother's or Father's Day? Are your routines going to be disrupted by COVID-19 as well?


Monday, April 27, 2020

Visual Background Noise

For Lizzie, a lot of items in her room seem to not be visible.

While she loves her music player, she never turns it on by herself anymore. When we turn it on for her, she's always surprised by it.

Earlier in the process when Lizzie was still looking through magazines, she would only ever "see" the top one, she would never realize there was a stack of different magazines.

Even earlier in the process before Lizzie moved into the home, Lizzie stopped "seeing" the dust bunnies, the rings from tea mugs on the coffee table, the spots on the bathroom sink or mirror.

a blurry picture of a man holding his glasses away from his face
Photo by Nathan Dumlao on Unsplash

It seems like there is too much visual background "noise". Obviously, noise isn't the correct term as you can't see noise... at least I don't think you can. But the concept is the same.

In school, we teach kids to filter out the unimportant background noise and focus in on the important noise happening within the classroom. This works well until something interesting happens outside the window or in the hallway. Then all the attention turns in that direction.

For Lizzie, it's as if her brain is so focused on handling the important details of what she's thinking about or doing, that it ignores whatever isn't relevant to the immediate task.

Once the item is pointed out to her, she can see it, but until then, it's not visible.

I wonder if the brain only has so much available "power" and only focuses on what it thinks is important at the time.

How about you? Have you experienced your Loved One not "seeing" things that are there? Any thoughts on visual background noise?

Monday, April 20, 2020

Smiles From The Dementia Files: Episode 1

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.

elderly couple enjoying a walk along a shaded lane

Episode #1
Circa Year 2 after diagnois


Lizzie: When did you last speak to your dad?

Me: Well, he died way back in 1999, so it's been a while...

Lizzie: That's right, I'd forgotten that. *sips tea* So, do you think you'll see him tomorrow?

Me: ... probably not.

Lizzie: Okay.


How about you? Does you Loved One ask about those who are long gone? 


Monday, April 13, 2020

Power of Music 1 - Classical Songs

Music is a powerful force.

Lizzie has always loved music. She grew up listening to music on the family radio. While Lizzie's mom was into Jazz and Swing, Lizzie and her brother fell in love with classical music.

At an early age, she could identify Bach from Beethoven from Brahms within only a few seconds of listening to a piece.

When we were old enough, Lizzie and my dad bought a piano on a rent-to-own program and scrounged up the money for my sister and I to take piano lessons.

Nothing made Lizzie happier than listening to us practice the piano, especially the classical pieces that were never our favourites.

close up of piano keys on a well-loved piano
Photo by Ryan Holloway on Unsplash

Now, we can often use her love of classical music to help redirect her during stressful times.

Who is your favourite classical composer/song?

Who was your favourite classical composer/song when you were a kid?

What was the first song you remember hearing on the radio with your brother?

Did you and your brother both like the same composers/songs?

When you and your brother made your bands, what songs did you play?

When you and your brother made your bands, what did you use for instruments?

Did you have other friends who liked music like you and your brother?

What did your mom and dad think about the music you listened to?

Did you ever make up words to go along with the music?

Did you sing as a family? What songs?


How about you? Do you ever use music to help redirect your Loved One? Does your Loved One enjoy classical music as well?